Collaboration among Patient Advocacy Groups, Scientists & Clinicians Moves Porphyria Research Ahead
Editor’s Note: Recognizing National Porphyria Awareness Week this week, we invited Desiree Lyon, the Executive Director of the American Porphyria Foundation (APF), to share how her organization is supporting research that improves treatment and ultimately seeks a cure for this rare disease. Patient advocacy groups addressing rare diseases play a…more.